Awareness, need and utilization of breast cancer risk management resources in women with hereditary cancer susceptibility.

IF 3.3 3区医学 Q2 ONCOLOGY

Breast Cancer Research and Treatment Pub Date : 2026-10-18 DOI:10.1007/s10549-026-08104-2

Gerneiva Parkinson, Sue Friedman, Rachel Hodan, Allison W Kurian

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Abstract

Background: Germline genetic testing is increasing. While testing barriers are well characterized, less is known about post-testing needs and utilization of screening and prevention resources by women with pathogenic variants (PVs) in breast cancer susceptibility genes.

Methods: A 38-question online survey was developed by Facing Our Risk of Cancer Empowered (FORCE), a patient advocacy group, and administered electronically to subscribers from February-May 2024. Study eligibility criteria included female sex and a germline PV conferring elevated lifetime risk of breast cancer (ATM, BARD1, BRCA1, BRCA2, CDH1, CHEK2, PALB2, PTEN, RAD51C, RAD51D, STK11, or TP53).

Results: Of 1,025 respondents who initiated the survey, 937 were women. Most were non-Hispanic White (91.7%) and from the United States (81.6%). The most common PVs were BRCA2 (31.4%), BRCA1 (25.5%) and CHEK2 (9.2%). The most frequently used resources were education and information services about medical options (39.3%) and peer support (28.1%). Few respondents used financial navigation (4.0%) or financial support (5.3%), but up to 45% reported needing these services. Among breast screening users (53.8% used mammogram, 42.2% magnetic resonance imaging, 19.4% ultrasound), 37.8% found it hard to prepare emotionally for results and 14% found it hard to pay for screening. One-third (37.1%) of respondents found deciding whether to have risk-reducing mastectomy hard; two-thirds (64.0%) found physical recovery hard, more than half (60.2%) found emotional recovery hard, and one-quarter (24.7%) found paying for risk-reducing mastectomy hard.

Conclusion: In this contemporary sample of women at elevated risk of breast cancer, more than one-third had unmet financial needs and up to two-thirds had difficulty with screening or risk-reducing surgery. Closing these gaps will be essential to improve outcomes for women with hereditary breast cancer.

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遗传性癌症易感妇女乳腺癌风险管理资源的认识、需求和利用

背景：种系基因检测正在增加。虽然检测障碍已被很好地描述，但对于携带乳腺癌易感基因致病性变异（pv）的女性检测后的需求以及筛查和预防资源的利用，人们知之甚少。方法：一项包含38个问题的在线调查由患者倡导组织Facing Our Risk of Cancer Empowered （FORCE）开发，并于2024年2月至5月期间以电子方式向订户进行管理。研究资格标准包括女性和具有终生乳腺癌风险升高的种系PV （ATM、BARD1、BRCA1、BRCA2、CDH1、CHEK2、PALB2、PTEN、RAD51C、RAD51D、STK11或TP53）。结果：在发起调查的1025名受访者中，937名是女性。大多数是非西班牙裔白人（91.7%）和美国人（81.6%）。最常见的pv是BRCA2 (31.4%), BRCA1（25.5%）和CHEK2（9.2%）。最常使用的资源是关于医疗选择的教育和信息服务（39.3%）和同伴支持（28.1%）。很少有受访者使用财务导航（4.0%）或财务支持（5.3%），但高达45%的受访者表示需要这些服务。在乳房筛查用户中（53.8%使用乳房x光检查，42.2%使用磁共振成像，19.4%使用超声波），37.8%的人认为很难在情感上为结果做好准备，14%的人认为很难支付筛查费用。三分之一（37.1%）的受访者认为很难决定是否进行降低风险的乳房切除术；三分之二（64.0%）的人认为身体恢复很难，一半以上（60.2%）的人认为情绪恢复很难，四分之一（24.7%）的人认为支付降低风险的乳房切除术很难。结论：在当代乳腺癌风险较高的女性样本中，超过三分之一的人没有满足经济需求，多达三分之二的人难以进行筛查或降低风险的手术。缩小这些差距对于改善遗传性乳腺癌妇女的预后至关重要。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Breast Cancer Research and Treatment 医学-肿瘤学

CiteScore

6.80

自引率

2.60%

发文量

342

审稿时长

1 months

期刊介绍： Breast Cancer Research and Treatment provides the surgeon, radiotherapist, medical oncologist, endocrinologist, epidemiologist, immunologist or cell biologist investigating problems in breast cancer a single forum for communication. The journal creates a "market place" for breast cancer topics which cuts across all the usual lines of disciplines, providing a site for presenting pertinent investigations, and for discussing critical questions relevant to the entire field. It seeks to develop a new focus and new perspectives for all those concerned with breast cancer.